Thursday, May 26, 2011

The Road Less Traveled

Sometimes we choose the path we will take in life, sometimes it chooses us. About an hour after Ruby was born, we were given the news that she may have Down Syndrome. The Midwives recognized a few markers characteristic of downs and shared their concerns with us. We spent a few days of asking ourselves, "does she or doesn't she?". At times we could see it in her eyes, other times we saw nothing. We'd talk ourselves into believing it and then convince ourselves otherwise. We took her to the pediatrician and a blood test confirmed the diagnosis 5 days later of the presence of an extra 21st chromosome. And so began our journey...and hence our new motto, "it could be worse".

We were sent for an echocardiogram as kids with Down's have a 40% chance of congenital heart defects. We unfortunately were given the news she was within that percentile. Ruby has 2 holes in her heart, the cardiologist is hopeful the more serious one will close on it's own, but otherwise we will just be on the watch for signs of heart failure which would then lead us to open heart surgery. The other hole isn't something we have to worry about until she's older and it can be taken care of with less invasive surgery. So, it could be worse.

For now, we have a typical newborn who just eats, sleeps and poops. She's very cute and is a dream in comparison to our dear 2 year old Luna (who is dealing with not being the center of attention...and with the terrible 2's). We've been running through a litany of tests to see if she has one common ailment or another that tends to affect those with Down's. They are setting us up with a geneticist as well who will help guide our next steps in this whole process.

We go through waves of grief, but remind ourselves how no future is written for any child. You can have a completely healthy and typical child who is diagnosed with Leukemia or a slew of other afflictions. We question whether we would have wanted to know this before she was born...but aside from the weight of this news brought upon us shortly after finally having our home birth we had dreamed of, we had a few days to fall in love and bond with our new daughter without any confirmed label, grief nor expectations. So although the road we are about to embark on in life with our new daughter isn't what we had expected, this road less traveled may make all the difference.

1 comment:

Jen and Gig - Congrats on your beautiful newborn and for having the home birth you wanted. You will be wonderful parents to this very special Ruby, providing her will all the opportunity and love that she deserves. Please know that you have a listening ear and hugs available anytime from the Wheelers in Seattle anytime you want to talk, vent, cry or laugh.